Safe Spaces for Pacific
Because of Pacific’s disorder, he cannot be exposed to UV light. UV comes primarily from the sun, but it is also present in some artificial forms of lighting.
We are learning all about the precautions we need to take to keep him safe. To help with this, we have a UV light meter. There is no known amount of UV that is safe for Pax, but because we can’t protect him 100% of the time, we aim to at least keep his UV levels below 10. To give perspective, the UV levels outside even on cloudy days can be up around 1000. Windows filter out some UV, but not enough for Pax unless they are specially treated.
We love suggestions of local places that look like they’ll be safe for Pax, as well as being able to visit friends. If you’re up for doing a little bit of scouting, here’s what you need to know. If you aren’t sure if a space would be safe for Pax, just ask us. We can get a general idea from a description or photos, or can check it in person with a light meter.
Artificial light sources:
- Safe
- LED lights
- Incandescent lights
- Fluorescent or halogen lights with covers
- Sometimes Safe
- Fluorescent or halogen lights high off the ground
- Not Safe
- Bare fluorescent or halogen bulbs
- Blacklights
Natural Light Sources
The UV from the sun can penetrate through clothing and glass. For Pax to be outside safely, he must wear two layers of UV treated clothing or denim, over a layer of sunscreen. He must be covered from head to toe, including a shield of UV protecting plastic attached to a hat and over his face. (Remember, sunscreen doesn’t protect his eyes or the inside of his mouth!)
- Safe
- Windows with light blocking curtains
- Outside after dusk
- Sometimes Safe
- Windows treated with UV film- not all films are sufficient- we need to test with our meter to be sure
- Windows with blinds (blinds are sufficient, but there are often small holes where light beams come through and are an issue)
- Distant windows
- Not Safe
- Bare windows
- Shade
The consequences of UV exposure of Pacific are very serious. In an acute sense, short term exposures can leave him with severe burns over all exposed portions of his body. Over the long term, his DNA is unable to repair the damage done by UV radiation, and that leaves him with a 10,000 higher chance of skin cancers compared to the general population, and a 1,000 increased risk of eye cancer as well. Thankfully, with our UV meter from the XP Family Support Group, we are able to know for sure if we are keeping him safe at any given time.
Posted on August 7, 2013, in Uncategorized and tagged xeroderma pigmentosum, XP. Bookmark the permalink. 2 Comments.
You’ve likely already tried it, but how about the Seattle Children’s Museum? http://thechildrensmuseum.org/ It’s downstairs in the Seattle Armory at Seattle Center and doesn’t seem to have a lot of windows, besides the area that opens up into the center of the Armory.
Yep! It is completely UV safe there also! Thanks for the suggestion 🙂